Development of the Integrated Parkinson's Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson's disease
Development of the Integrated Parkinson's Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson's disease
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DOI：
10.1007/s11136-018-2092-0
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发表时间：
2019-05-01
影响因子：
3.5
通讯作者：
Liddy, Clare
中科院分区：
文献类型：
--
作者：
Kessler, Dorothy;Hauteclocque, Jennifer;Liddy, Clare
帕金森病（PD）是一种影响生活各个方面的进行性神经系统疾病。需要将医疗和自我管理结合起来，以协作的方式进行护理，以增强PD患者的功能和生活质量。在开发三级PD诊所的综合护理方案时，我们使用了共同设计过程来收集利益相关者的意见。方法采用调查和访谈相结合的横截面混合方法进行研究。来自诊所的患者和护理者参与者完成了两份问卷，以评估自我管理支持的感知接收（慢性疾病护理患者评估）和管理健康状况的激活（患者或护理者激活测量(R)）。这些参与者和医疗保健提供者的一部分参加了半结构化访谈。对调查数据进行描述，并使用Spearman秩序相关法检验患者特征与问卷得分之间的关系。访谈采用传统的内容分析法进行分析。结果57名PD患者和30名护理人员完成问卷调查。访谈了13名患者、6名护理人员和6名医疗保健提供者。58%的参与者中度到高度活跃地管理他们的PD生活。参与者对自我管理支持的看法各不相同，但在目标设定和后续支持/协调方面缺乏。定性分析揭示了与PD管理经验相关的四个总体主题：激活、自我管理支持、协调护理和获得服务。这是第一个探索PD患者激活的研究，发现激活水平高，但自我管理支持水平中至低。共同设计过程强调了更加协作的护理方法的重要方面。
Background Parkinson's disease (PD) is a progressive neurological illness that impacts various aspects of life. Integration of medical and self-management in a collaborative approach to care is needed to enhance functioning and the quality of life of PD patients. In developing an integrated care program at a tertiary PD clinic, we used a co-design process to gather stakeholder input.Methods This is a cross-sectional mixed methods study using surveys and interviews. Patient and caregiver participants from the clinic completed two questionnaires to evaluate perceived receipt of self-management support (Patient Assessment of Care for Chronic Conditions) and activation for managing their health condition (Patient or Caregiver Activation Measure (R)). A subset of these participants and healthcare providers took part in semi-structured interviews. Survey data were described and tested for relationships between patient characteristics and questionnaire scores using Spearman's rank-order correlation. Interviews were analyzed using conventional content analysis.Results Fifty-seven PD patients and thirty caregivers completed the questionnaires. Thirteen patients, six caregivers, and six healthcare providers were interviewed. 58% of participants were moderately to highly activated to manage their lives with PD. Participants' perceptions of self-management support varied but was lacking in dimensions of goal-setting and follow-up support/coordination. Qualitative analysis revealed four overarching themes related to experiences of managing PD: activation, self-management support, coordinated care, and access to services.Conclusions This first study to explore patient activation in PD found high levels of activation but moderate to low levels of self-management support. The co-design process highlighted important aspects of a more collaborative approach to care.